Thanks to the NIH and Children's Inn

I would like to thank the NIH for the most obvious thing first of all. Thank you so much for accepting our little girl into the protocol and giving her a fighting chance at life. I think that everyone has agreed that the gene therapy is working. It may be slow coming, but Katlyn's immune system is getting stronger and stronger everyday. I really hope that Katlyn's doctors at the NIH realize what they have done for her. With a bone marrow transplant, the outcome was questionable and very scary. You have saved our little girl's life. Each of you have a part in that, and we thank you from the deepest depths of our heart. We look foward to working with you over the following years to watch Katlyn's progress.
I'm so glad that Katlyn was able to benifit from her treatment, but also be able to help children that come after her with this diagnosis. Participating in a research study is very difficult because you have a lot of unanswered questions, but Katlyn's doctors did their absolute best in trying to provide us with as much information as possible.
We also thank you for trying to work with us to make our stay as comfortable as possible. We understand that our practices were not what you were used to, but I think that you tried your best to help put our minds at ease. Some of the nurses that worked with Katlyn are some of the most fantastic people we have ever met, and we are going to miss seeing you and will look foward to seeing you when we come back for Katlyn's checkups.
I don't really think I could ever let the Children's Inn know how thankful we are to them either. You gave us a support network and leaning post when we needed it most. You really took care of us in so many different ways. We loved all your hugs and kind words over the six months we spent there. You were there for us when things got stressful and always did everything you could to take the stress off our shoudlers as much as possible. I think everything you do is amazing and everyone who has a part in making the Children's Inn what it is, is so special.
Thank you to everyone at NIH and the Children's Inn who had a part in Katlyn's treatment and helping to make our stay as comfortable as possible.
Some of you really touched our hearts and we will never forget you.
Thanks

I am happy to update Katlyn's blog with the news that we are back in Canada. YEAH!!!!Katlyn is at the IWK Children's Hospital in Halifax, N.S., for an unknown amount of time. We know one thing for sure. We still have to get things ready for her. Katlyn needs a safe place to live first. So right now we are looking at my mother's home to decide if that would be safe enough. If it isn't we have to find an apartment in Moncton, along with new jobs and the whole deal.
Katlyn is doing great though. She seems to have transitioned very well. When we came back here, it almost felt as though we never left. They were definitely waiting for us with open arms. We will be returning to the NIH on Nov. 26, for Katlyn's research blood.
Today is a very exciting day because John's mother, father, two grammies and super special daughter Haley, will be coming to visit. We have missed them so much. It will be very interesting to see how Katlyn and Haley interact with each other. I think it's going to be a blast. My mother will be coming to visit on Sunday, and I can't wait. We have missed everyone so much. It will be so refreshing to have people we love surrounding us.
Katlyn's neautrophil count as of Wednesday was 740, so it's looking like she may be ready to leave the GCSF behind (knock on wood). It has now been over two weeks since she has received her last injection. We are still waiting to hear about some of the research blood that they drew before we left. I'm thinking we should get some of the results at anytime now. Katlyn is on a double isolation right now, the first being her condition and the second because she came from another hospital. They have tested Katlyn to see if she has the antibiotic resistant super bugs. It's their policy to do this will all patients coming from another hospital. It shouldn't be much longer and she will lose that isolation.
Her doctor here has been fantastic in allowing Katlyn to still continue with her very open diet. She is allowed to get meal trays from the kitchen here. He even OK'd her stuffed animal, which she was very pleased with.
It's so great to be back. I LOVE CANADA!!!!!!!!!!! It's very nice to look at the big picture too, and see that that chapter of Katlyn's life is behind us now. That light at the end of the tunnel just keeps getting brighter and brighter. Someday soon we will be able to take Katlyn out of the hospital and that day is get closer.

So Katlyn is doing very well and just to let you all know her burn has cleared up very well. In one spot on her face, it must have been where the burn was the worse, the skin dried out and we were a little scared that it might start peeling off and scabbing. So we stopped using the burn cream and started to apply some special cream that we got from Canada (Eucerin Glycerin- not anywhere in this Country). So the rest of the dry skin eventually came off and it looks fantastic. She has one tiny little red spot, which I think is going to fade out. Luckily she never got it her eyes, developed an infection or is going to have any scarring.
She is doing FANTASTIC, her new word by the way. Katlyn's last t-cell function came back at 28,000 and her research blood is going to be drawn a bit early, on Monday Oct. 22. So that means that we will be returning to Canada on Tuesday. We are not waiting on any test results, so it should be a go ahead. We are extremely excited. The last week has been really wonderful for us because Katlyn has been staying at the Children's Inn every night and only coming back here every second day. We can tell she really loves it too. She actually get pretty upset when her she rolls up in her little red car in front of her hospital room door. She has seen what it is like to be in a warmer, more homey setting.
Her speech is coming along very nicely. I actually don't think there is anything she won't say. New words are coming out all the time. We are actually going to get her hearing tested as soon as we get back to Canada, because we have our suspicions that it may be a little better than her last hearing test (which was done a long time ago now). It will nice to check it anyway.
So we are looking forward to going back to the IWK. Although Katlyn will still be hospitalized, we are very excited to be closer to home. As soon as we get home we are going to plan a visit with Katlyn's sister Haley, all her Grammies and Grampy. We are so excited. We will not have to be back until Nov. 26, and then after that Katlyn's appointments will change to every two months. I'm going to post a bunch of pictures of our girl because I know I have been slacking in that area. We have just been so busy having our little girl at the Children's Inn, and having a great time

It was a pretty tough weekend for our little sweety. On Friday we were at the clinical centre and all set to come over to the Children's Inn with Katlyn. We had Saturday completely off, which meant that for the first time in over a year, Katlyn would not have to go to the hospital all day. So we though. Katlyn was at the door anxiously waiting to get out with a couple of her toys in her hands, including her giggly wiggly and a Halloween flashlight that we had recently found for her. Anyway I had to put a mask on her so I took the toys our of her hands and she forgot all about them, so they were left behind. When we got to the Children's Inn we took of the mask to find that Katlyn's cheeks we red. It was windy outside, so we thought it could be possibly that.
She was fussy, but also very tired and went for a nap. When she woke up, she had these very defined red marks on her face. Upon taking a closer it look, it looked like a chemical burn to me. I lightly wiped at it with some baby soap and water, and she freaked out. We rushed Katlyn back up to the Clinical Centre to get it looked at. The doctor came in and we were all scratching our heads trying to figure out what could have made such a mess of her face. Katlyn was fussing so I grabbed her giggly wiggly toy, which was covered in an oily substance. I then quickly grabbed the flashlight, which was completely covered in it. We opened it up to find the inside was also covered. The batteries had leaked, resulting in a chemical burn on Katlyn's face.
Friday night was a very long night. Katlyn was very uncomfortable and I felt as though I only got minutes of sleep. I had to apply some ointment to her face all through the night to prevent infection and to soothe the burn. Also we had to give Katlyn some benadril because it looked as though her body was having a reaction to the chemical. The Yesterday the burn looked a bit better and hadn't blistered. We have to be very careful with it so that it does not get infected and it scares us.
Now we're Sunday and again the burn looks a bit better. Hopefully it heals up without any infection and no scarring.
She's been a trooper though. Even though it hurts for us to wipe at it and apply the lotion, we are still able to, even though she gets upset. I can only imagine how much it hurts. So we can't take her outside right now because the sun on the burn could make it worse. She is now back at the Children's Inn with us, but Poison Control and the doctors check on her regularly.
What a scare. This toy was made in China and put on the shelf by the store where I purchased it. I am now working on getting them to rectify the situation. I hope to get the toys pulled from the shelf for starts. I need answers and I'm going to their corporate offices for some. If I don't feel as though they have made their best effort to rectify the situation I will be seeking some legal advice and possibly going to the media. That should not have been on the shelves for starters, and who knows how many parents have bought that same flashlight for their child.